Tricky next steps

GothicGremlin

I'm really not sure how best to proceed here …. My former next door neighbor, V, in San Francisco, has slowly been progressing. I'm not sure whether he has vascular dementia, straight up Alzheimer's, or some other dementia.

The last time I saw him (a month ago), his emotions were beginning to flatten out, and he couldn't keep up his end of the conversation. This is a man who has a million stories, all of them entertaining.

My s.o. and I currently live in WA state, so it takes a little bit of time to get to him. V's husband spends most of his time in Palm Springs. V is 88 and D is 91. D has afib. D called me yesterday to give me the latest. V fell, and knocked himself unconscious. He also knocked out a couple of teeth. He's recovering, but he's got a lot of stairs in his house. There is one steep flight of steps to get the front door, and then a flight and a half to get up to the bedrooms. D also told me about the outbursts that are just this side of meltdowns, and the memory loss (which I've also seen). V's doctor told D that V's latest cognition test shows that he has declined since the previous test of six months ago.

D asked me to send him some info on Alzheimer's, so I sent him some of the charts I used when I was caregiving my sister. D sent me an email today saying that he didn't see V on any of the charts. 😐️ I'd put V at mid to later stage 4. So, D is in denial.

What do I do? D and I talk frequently about V. My s.o. and I have known the two of them for 30+ years. I don't want to overstep, but I'm really worried about V being home alone with all of those stairs.

The only possibilities I see are:

1. Place V in assisted living
2. Have both D and V live in Palm Springs or SF, but not both
3. bring in live-in care

Maybe there are more possibilities?

H1235

Is he still in the hospital? Could you suggest that the doctors be consulted on the level of care he needs? The doctor says he has progressed is vague. It sounds like D needs to hear the specifics of the diagnosis from the doctor. I thought a hospital wouldn’t send someone home unless they knew they were getting the proper level of care.

harshedbuzz

@GothicGremlin

That's got to be hard for you to watch. I hope you can make some progress around this.

Given the age and health of the couple, I wonder if this could be a situation where both parties have some cognitive impairment running in the background.

It sounds like V has been seen and is being monitored for cognitive issues. That he asked specifically for "Alzheimer's information" suggests that the doctor has used the A-word at this point. That's not seeing V's behaviors in the symptom checklists could mean a couple of things—

If D and V spend most of their time apart, it's possible D isn't seeing the concerning behaviors. Could V be showtiming?

It is possible D is too close to the situation and is like the frog in the pot of water set to boil. There is likely some denial in play as the spouse who would need to become a caregiver if his husband had dementia.

It could be V has a somewhat atypical presentation or that his personality is such that behaviors might not seem like symptoms. I have eyes on my own mother who is 87 and has wicked ADHD and a quirky personality. Her social filter and executive function have always been iffy. If she were to get lost, it would not be uncharacteristic of her; my dad always told the story of mom being unable to give him directions to her house on a first date. He stopped and asked a man walking his dog how to get to Elm Street. The man poked his head in the car, recognized my mom and said "Betty's house? Make a left here, go down 2 blocks and it's the last house on the left". She was 2 1/2 blocks from home.

Could it be D is having trouble translating what he's reading into the behaviors he's seeing? Perhaps he doesn't consider a borderline meltdown to be a "catastrophic reaction". Maybe he believes some memory loss is completely normal.

Or maybe he's having his own cognitive shift but isn't as far along. His inability to see what's in front of him could be the characteristic "lack of empathy" that is seen in the early stages. Or maybe he has his own health issues that are distracting him. Does a Plan B person exist for either of them?

SF is one of the few places in the country that has aging services that are LGBT+ informed so there may be support and information to be found there.

HB

forbarbara

GG, I may be way off base here - but maybe D is in denial about hearing this from you because he fears that V’s journey will be like Peggy’s. Is there someone else who’s close to all of you who could join the discussion?

I’ve recently had this experience with a dear friend whose husband is now in MC. She couldn’t hear me because she she had heard too much of my grief.

I really hope you’re able to reach and help D and V. Good luck.

GothicGremlin

@harshedbuzz

Oh yeah, V is definitely showtiming. I've seen that too. If I ask how he is and how D is he'll say "I'm perfect, D is perfect, everything is just perfect." And he'll sound like himself when he's saying it. But then, once he's past that, we have to prompt him to get any original conversation.

I don't know about D's cognition, I hadn't really thought about it. I haven't seen anything,but that doesn't mean it isn't there. D has always seemed like the grown-up in the room. I'm wondering if his afib has something to do with his inability to recognize what's going on. He's always so preoccupied with his pulse (as is his doctor) - he has to stand up carefully so that he doesn't faint. What does that do to your cognition?

D sees V once a month and he stays in SF for about a week or so when he's there, so he sees the behaviors. They also talk on the phone a million times a day, so he's pretty aware of everything. I think he just doesn't want to see it/believe it, and I totally understand that. But in this case, it's not helping.

About a Plan B - this is another extremely concerning thing to me - as far as I know, there is no Plan B. 😱 Again, it's a place where I don't want to overstep, but if something happens to D, and he's in Palm Springs when it happens, I don't know who is going to inform V. And if something happens to V, it's going to be at least 8 hours before D gets to him.

This is really hard for me to watch. D & V have been such big parts of our lives for so many years.

The only good thing here is as you say, SF has many LGBTQ+ resources available. Palm Springs does too, especially for the older set.

@H1235 - yeah, he's home now. I thought the same thing as you about the hospital. I guess they let him go because another neighbor picked him up and brought him home. All of this sounds vague to me, but I'm getting my info filtered through D, who seems to be an unreliable narrator.

@forbarbara - I wondered that too, but they both knew Peggy and both of them took her death pretty hard. V was in tears over it. D has asked me a lot of questions about Peggy's progression since V was diagnosed. V is on aricept, so I know D realizes the truth of the situation even if he doesn't want to believe it.

Getting someone else involved is a great idea. I have someone in mind, and maybe the two of us can have a conversation with D…

weareallunique

Do they have wills, trusts , named DPOAs —other than themselves— may be time to get their backups involved. [SF has way too much info on line - so if there is a trust you'll see the title on tax collector or recorders documents. https://recorder.sfgov.org/#!/simple ]

If they own homes in those 2 cities , that's an estate over 1 mil- 2mil plus easy so if they haven't made plans they really should . Probate at any age is a hassle but at 90 ? Not having easy access to funds etc.

You're a dear friend to stay involved and caring. And without realizing it they may be doing the two house thing because they didn't want to see their spouse's decline. So phone calls where they can control the narrative let's illusions continue.

GothicGremlin

@weareallunique

I know they have wills. They had talked about a trust, but I don't know if they followed through on it. They have DPOAs, but I don't think they have outside people named. I'm going to get on that with D, and gently quiz him about it.

California is a community property state, so they may be fine on that front, but I'm going to suggest to D that he consult with an attorney so that all of their ducks are in a row.

There's also probably something in what you say about the two house thing.

D & V - especially V - have always been there for me and my partner. Now it's our turn to help them out.